We started our campaign in Metastatic May with some information about treatment lines and it really caused a bit of a stir, especially on Instagram.
Why? Because people don’t want to think that this disease is going to kill us. We have to remain positive. We have to see the chink of light and I agree we all have to have hope. That was my introduction. We need hope.
Thank you so much to everyone who shared our messages this month.
We hope that you learnt a few things on the way too.
MetUpUk are the only patient advocacy group to address the issues we’ve been highlighting. We’re advocates, we’re campaigners and we’re activists. But most of all we are people.
Yup, we’ve all been there and met a few of these guys.
Which one is most prevalent in your life?
I think sometimes when those outside the cancer world imagine what treatment is like they think we go in, have some chemo, take some photos dancing around our IV pole and then go home and rest for a few days…. And don’t get me wrong I’m one of those people who have taken a cheeky chemo selfie and donned numerous items of leopard print to get me through those loooooooong days in the chemo ward, it’s like armour for what is essentially ritual poisoning!
We really need to raise awareness around what people with secondary cancer require, encouraging the debate to be placed upon the policy table. You can really help us by writing
In 2018 I was diagnosed with secondary breast cancer in my liver, I was 44.
I knew the survival statistics were grim, so decided from the outset, in order to outlive the 2 to 3-year median I’d have to embrace experimental drugs and treatments.
I made this clear during my first oncology appointment, telling my doctor I was keen to sign up for clinical trials right from the start.
I have been living with secondary breast cancer for 7 years, and am very aware that I’m one of the very lucky ones as the median life expectancy is 2-3 years. The general public perception of breast cancer is that it’s ‘sorted’ – eg if you get it you will be fine. But few people realise that when it metastases (spreads) to the organs as mine has, it cannot be cured. It is the biggest killer of women under 50 with over 11,000 women dying of it every year in the UK.
Stage 4 breast cancer with a pacemaker
Most people know someone with a pacemaker, and chances are that person will be elderly. The average age of a first pacemaker implantation in the UK is 72, but pacemakers are actually fitted in people of all ages from newborn babies to the very elderly. I was 39 when I had mine, which was needed as a complication after heart surgery to replace my aortic valve and root.
On March 22nd In Wales, the 20 page cancer delivery plan (CDP) had been replaced by a vague 3 quality statement. (QS)
The WHO recommends every nation should have a CDP and just like that Wales became the only nation in the UK without one.
I remember first hearing about genomics testing for cancer, about a year after my diagnosis of secondary breast cancer. I had failed on every line of treatment I’d been given, was fast running out of options, and looking for a lifeline